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Experiences with DMARDS/corticosteroids?

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
I know this is not what you want to hear but I would wait. Prednisone can trigger psychiatric symptoms (in some people, not in everyone of course) and she may want to avoid this. In addition, if you started it right as you were starting IVIG and then either got better or worse, there would be no way to separate what is causing what.
You're actually probably right, I'm trying to be patient. Strangely since upping to 5mg of LDN, I have had some really good days where Im almost symptom free and have been able to work 3-4 days a week!

If LDN helps me so much, wouldnt that be a clue towards autoimmunity or does LDN help infections too?
 

Gingergrrl

Senior Member
Messages
16,171
You're actually probably right, I'm trying to be patient. Strangely since upping to 5mg of LDN, I have had some really good days where Im almost symptom free and have been able to work 3-4 days a week!

I am glad you will (hopefully!) wait and not try Prednisone on your own prior to IVIG (unless Dr. C advises you to). And that is great news that you are having some symptom free days with LDN!

If LDN helps me so much, wouldnt that be a clue towards autoimmunity or does LDN help infections too?

I actually do not know the answer but am guessing that others do! I would assume that you could have both infections and autoimmunity and in either case you could be a responder, or a non-responder, to LDN (but I am just guessing)!
 

Seadragon

Senior Member
Messages
792
Location
UK
Had a terrible reaction to Prednisone recently so won't be going down that route now.

I have come to the conclusion (both from my symptoms and my reaction to various drugs) that I have both an overactive and underactive immune system and that simply either suppressing or stimulating my immune system seems to make things worse or/and not help at all.

Really wish there was something that would just "balance" the immune system dysfunction but I'm guessing there is no such thing. I seem to remember Jonathan Edwards confirming that a while back.